Being Mortal: Medicine and What Matters in the End
My friend told me about the book Being Mortal when it first came out. I did my usual thing which was I put it on my list. Then I saw a few articles on the book and finally decided to dive in and read it. The book is incredible. The writer is a doctor who not only shares his own personal stories around mortality but gives us clear data on how best to serve aging, death, medicine and to end our lives in dignity.
Being Mortal is a topic that nobody writes about or it seems wants to talk about. One of the most difficult decisions that families must make when a loved one gets sick is how to think with your head vs your heart. Generally it is not one person making a decision but several which makes it even more difficult.
As I read through each chapter I could not help but think about my Mom. We found out that she had a glioblastoma on November 5, 2010 and she died on December 15, 2010. We made a decision to have surgery because the doctors were not sure what type of brain cancer she had. The reality is I am not sure they wanted to tell us. I took her to the hospital right after the MRI showed a large mass in her brain. An entire week of tests in the hospital to rule out many things before operating. After surgery the doctor (and others that we saw) gave us this hope that if we had chemo that somehow we would prolong her life. There was no doubt in my mind that the life that they could possibly give her for maybe a few extra months (and that is a huge maybe) is not the type of life she would have wanted to live. She said that she wanted to be able to go to the movies, do the crossword, read her books and travel. If she could not do that our decisions should be made around those desires. We realized very quickly that treatment was not going to do anything and more than anything not let her leave this earth with self-respect.
There have been many studies done around hospice care. Not surprising but most have been conducted by insurance companies to prove that spending millions on medicine to keep someone going at the end of their life is not productive or a good financial decision. There is always a miracle in there but rarely. One thing that has come out strong and clear is that you live longer only when you stop trying to live longer.
When we told my Mom what she had and about the decisions we were going to have to make she said very little. She wanted to know if she was going to be able to take the trip she had planned in the next few weeks to Peru. Some might call me too pragmatic but when we were alone right after that I asked the questions that nobody wants to ask. I knew she wanted to be cremated so I asked where did she want her ashes to be spread and how did she want us to celebrate her life when she dies. I told her that she would not be taking that trip. She knew that there would be no returning to the life she had led but not one doctor told her that. They should have. It would have made it much easier for my sister and possibly my brother who supported the decisions that I made. It was important to me that we all were in unity on the decisions I thought should be made but it is not easy.
The other thing that nobody talks about is the decisions. The entire life of an illness is about decisions. They are constant. It is an endless stream of decisions based on the outcome of the last decision. It is emotionally draining.
At the end of the day, if I had to make any of these decisions again I would have chose to do nothing. We would have come home from the hospital after the endless tests that concluded she did not have an infection. She had a terrible quick moving cancer that there was very little information about. As one doctor said to me ( who was my gyno not the doctor that treated her ) is that having a glioblastoma is like being struck by lighting. In my heart I always knew that the decisions we made (I was the one in her will that was responsible for her medical decisions because she knew that I’d be pragmatic, tough and bold when it came to making decisions) were the right ones. This book has validated everything we did. We would have done less if the doctors were not so concerned with saving her but being thoughtful about maintaining her quality of life with dignity until the end. It might have given us more time just enjoying her company.